Pull the plug!

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Pull the plug!

Postby Bradford on June 12th, 2004, 11:20 pm

To: Theydontbelieveme,

What’s the point here? I just read the thread and the alleged ALS patient went to his doctor with slurred speech and swallowing difficulties. I also read the thread here at our forum I DIDN’T SEE ANYTHING IN THIS THREAD WHERE THE GUY COMPLAINED OF REDUCED SPEECH RATE! I think everyone who reads my reply should note that Theydontieveme may be putting words and meaning into things where they are not applicable, beneficial, or truthful.

You must have a real “jones” about this issue and must know this guy really well to tell us all that he had reduced speech rate because he certainly didn’t say anything about it in the post that you participated in with him. Are we to assume that he has confided in you since he’s been diagnosed with ALS and you have his confidence regarding medical history?

So why don’t you tell us all how you can say that he had reduced speech rate when by his own accounts, only BRIEFLY posted about slurring and swallowing problems. This guy joined brain talk in 2001 and here it is 2004 so there’s got to be something that made you put the two together right?

I remember seeing a post about motor neuron diseases in regards to ALS that bulbar progression is rapid to death compared to lower neuron involvement. In addition, bulbar onset by percentage is much lower than limb onset (more common). According to the numbers, this guy shouldn’t be surviving. Care to take a crack at that, or are you too busy diagnosing your self with ALS as your posts tell you are going to do because you can’t believe all the neurologists you’ve seen.

Oh by the way, this information was gleamed form the Cleveland Clinic Neurological Forum in the archives and an outline to medical students by Dr. AJ Windebank of the Mayo Clinic titled Motor Neuropathies and Motor Neuron Diseases. How about your information where does it come from? Come give us a break and site your references or do us all a favor and pull the plug on your computer and donate it to a school or something because it would be better used there then in your hands!
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Postby SusanSid on June 13th, 2004, 2:14 am

Go Bradford! :wink:
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open forum

Postby terryg on June 13th, 2004, 11:08 am

(DisclaimerI do not have severe symptoms at this point and it would take some convincing to think I had ALS).
That being said this is an open forum. I find the evidence presented much more clarifying & much more useful. I feel we need to honor every ones opinions and logically debate them. I have gained more security with more information. There is a time element for most of us here. The longer we are here the information becomes stronger and stronger that we are OK. I think Theydonot believeme is posting in good faith. I know when I saw that thread a while back it was scary. But after awhile I was able to pick out inconsistenties with some of the posts. I feel this represents a growth for me.

Takecare
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Hi

Postby dont on June 13th, 2004, 11:26 am

Terry G. There were inconsistencies? I didn't read it but know the comments just on here have scared me to death. I just cannot believe anyone would lie about having it. I can see how someone can be convinced they have it even if their doc says they don't but to say you have it when you don't just blows my mind. I know I would love to be able to put all of this behind me and never come back here again. No offense but if you know you don't have it why would you keep coming back and telling people you do and scaring people to death and keeping it alive in your own head. I know it's set me back a couple of months in the anxiety department, so much so that I sometimes feel that I need to even stay off of this site even though many have helped me a lot sometimes I think it hurts me and sets me confidence that I can believe my doc way back when something like this takes place especially when the stupid twitching and odd feelings won't go away!

Take care,

Karen
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Postby Johnny on June 13th, 2004, 1:55 pm

Brad,

I think you have your threads confused. The person TDBM is talking about did not go to the doctor with slurred speech or swallowing difficulties. He did present with what he described as slow speech. He was initially diagnosed with MND after an EMG that showed slight abnormalities in a few areas. However, he reported recently that his speech has improved. In fact, he had a follow up with his neuro Friday in which the doctor seemed to discount the possibility of ALS due to the man's speech improvements.

TDBM is not talking about a guy who initially complained about slurred speech or swallowing problems. TDBM's point was that bulbar symptoms can wax and wane in ALS as evidenced by this man's diagnosis. However, TDBM has his facts wrong too! THE POSTER HAS NOT BEEN DIAGNOSED WITH ALS!!!
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Postby dwl on June 13th, 2004, 2:44 pm

....and in any case, his emg was NOT NORMAL!!!
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Postby YYYYT on June 14th, 2004, 5:21 pm

Johnny wrote: TDBM's point was that bulbar symptoms can wax and wane in ALS as evidenced by this man's diagnosis.


wonderful

That means if problems go away, you could still have it.
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Postby jcavan4125 on June 14th, 2004, 7:33 pm

No YYYT you didn't read Johnny's post correctly. He was staing that TDBM was incorrect in saying that ALS symptoms wax and wane.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Johnny on June 14th, 2004, 8:02 pm

YYYT

I should have worded it differently. What I meant to say was:

TDBM said the person was diagnosed with ALS. However, the person was not diagnosed with ALS as of his neuro follow up last Friday. Yes the person was initially given a diagnosis of MND after an abnormal EMG, which was prompted by symptoms of slow speech. However, his symptoms of slowed speech have improved. That very improvement (wax and wane) led the neuro to believe the person does not have ALS.
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Postby dsiple on June 15th, 2004, 11:22 am

I believe that TDMB is talking about me-dsiple-I am not sure, but the time line that was described fits me to a tee. I saw my neuro on Friday, and had a great exam and very positive report from him. I am not sure where TDMB got that I was diagnosed with ALS, as I have never mentioned a definite diagnosis on any post that I have ever put up, whether here or Braintalk. The neuro said that regardless of what the EMG showed, what was important was that I had ZERO progression and have actually improved. Strength and reflexes were excellent and he commented on the improvements in my voice. He said ALS would be highly rare, but said time is the biggest factor, as I have had no negative changes in 6 or 7 months, and he wants me back for a check up in 6 months. He was actually almost as I happy as I was with the exam results, the only difference, I shed a few tears of joy--he didn't.

Regards,
Duane
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Postby Johnny on June 15th, 2004, 2:56 pm

Well that should clarify things a bit. Yes I believe it was you Duane who TDBM was talking about. Thanks for coming on and clearing things up. I am very happy for you and your family that things are looking up.
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Postby jcavan4125 on June 15th, 2004, 4:02 pm

That's great news dsiple!!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby puggriffey on June 15th, 2004, 6:58 pm

Duane -

That is awesome news, and I'm confident you'll keep getting more and more of it. What a great success story, and I'm glad you sahred it with us.

Hang in there - here's to a speedy and complete recovery for you!

JG
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Postby YYYYT on June 18th, 2004, 3:57 pm

Johnny wrote:YYYT

I should have worded it differently. What I meant to say was:

TDBM said the person was diagnosed with ALS. However, the person was not diagnosed with ALS as of his neuro follow up last Friday. Yes the person was initially given a diagnosis of MND after an abnormal EMG, which was prompted by symptoms of slow speech. However, his symptoms of slowed speech have improved. That very improvement (wax and wane) led the neuro to believe the person does not have ALS.


thanks for clearning that up. I guess I read it the wrong way the first time through.
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Postby Arron on June 22nd, 2004, 3:09 am

Trust me, there have been people in the past (no names mentioned here), that have indeed come on here and claimed they were diagnosed with ALS when indeeed they hadn't. This started a HUGE panic frenzy because one [email protected]&e of a freak, decided to self diagnose his/herself, when he/she hadn't been diagnoised with anything other than BFS at all, by numerous doctors. Ther are people out there that are just pathalogical liars and who don't care what the facts are, they just want to say what they want to say at any expense of other's, and I am sure we will have some more "freaks" like that in the future, and I will just continue deleting them from the site when I find them.

We have had many other "overboard" people on here that after 4, 6, 8 and even 10 clean EMG's (imagine how much THAT costs) at numerous world renowned clinics, who STILL come on here and post about believing they have ALS and asking if twitching here, or twitching there is "normal" for BFS. These people don't need a neurologist, they need a psychologist, and probably a few weeks stay at a mental facility with some heavy meds to bring them back down to reality.

So far, the majority of the poster's on this site are really good people and I don't get "called-in" very much. There is a VAST anmount of information on this site, and if you just search through and come to your own conclusions, you won't have to worry about some psycho's bogus or misleading posts, because you'll KNOW what is true and what isn't.

Keep up the great work everyone and just try to read between the lines a little when someone posts something that sounds fishy.
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